➣ Creative Cocooning: A Caregiver’s Journey
by Patricia McGuire
You may have heard that death is like the birth of the butterfly. What a peaceful thought that is. It brings images of delicate, colorfully-winged, creatures flitting from flower to flower. What it does not even hint at is the dramatic process of “cocooning” that happens between caterpillarness and butterflydom. More importantly we don’t get sick alone (if we are lucky). We will need a caregiver. Most of us know little about cocooning or caregiving. The furry little caterpillar pictured above looks so cute and harmless. And it is…until it begins to transform into a cocoon. Notice that as it spins its cocoon, it entangles those around it. Using the cocoon as a metaphor for the end of life and death processes can be very instructive. Transformation from “well and healthy,” to death is the most profound change we experience in life. (See “Cocooning” under topics for more information.) Not only that, but the caregiver can get so consumed with caregiving that they might lose their own sense of self, becoming immobilized in the cocoon (see picture below).
The average life expectancy twenty or thirty years ago was much shorter than it is today and many people died suddenly and unexpectedly. Today just 15% of us will die quickly. Medical advances allows the other 85% to spend longer and longer time in transition and caring for those in transition.
So let’s consider that we are all a bunch of caterpillars. 15% of us will emerge from our caterpillars suddenly and unexpectedly and be released to our new lives as butterflies. That may seem a lovely thought, but what about the other 85%? Some will have short illnesses, some will have a couple of years of decline, and still others will enter the place between “life as we knew it” and “living loss.” For example, consider Carol and Bob. They met when they were quite young, married, raised a family and had a good life together for many years. Then Bob got Alzheimer’s disease and the next fifteen years of their lives was filled with chronic sorrow and living loss. Carol told me, “He would get so agitated and yell at me to get out of the house.” Bob didn’t recognize Carol as his wife anymore. Thinking that she was an intruder in the house, Carol would have to go out the front door, change clothes, and “come home” through the front door. She would then be accepted as his wife once more, and Bob would tell her about “the strange woman” who had been there. Imagine the chronic sorrow of lengthy cocooning!
I made the furry caterpillar you see in the picture above. When I showed it to Carol, she became animated, excitedly taking it from my hands and wrapping it around her neck like a shawl. “This is exactly what taking care of Bob has been like!” she exclaimed. The following week, Carol returned with a treasure she wanted to share with me: a hand-made book about her cocooning process. The book was beautifully illustrated with her artful drawings. I was so impressed that when she finished reading it to me, I declared that I would dub my furry frined “Bob” in honor of her and her husband.
Here is Carol’s eloquent version of her cocooning journey:
I was a bush, bright and green
Covered with shimmering leaves upon which butterflies did preen.
Then one day along came this funny, furry little thing,
That climbed right up on a branch of mine!
Oh, Caterpillar, Caterpillar so furry and cute,
All dressed up in your Caterpillar suit.
I loved you true and you loved me too.
We used to laugh and play and throw away each day.
He took a bite here, and a little crunch there,
But I had so many leaves, I really didn’t care.
Caterpillar, you munch and crunch on me all through the day and night.
My life has become an agonizing fight.
Our memories fly away like dead leaves before autumn’s cold breeze
One by one my leaves do fall, one by one, you devour them all.
Like stiff-legged mice, across the frozen pond they fly.
Searching for comfort…they hopelessly try.
In your mindless advance,
You crunch and munch, as onward you prance.
Oh, Caterpillar, Caterpillar can’t you see,
You’re draining the life out of me?
Stripping away my last shred of dignity,
Only death can set me free.
Illness often precipitates the cocooning process. One woman who had been debilitated by Lymes Disease and was no longer able to practice her profession described the cocooning process beautifully when she told me, “I’m in a place between ‘I don’t fit like everyone else’ and ‘those in the main stream who can’t understand the life I live’.” She went on to say, “A friend asks me to lunch, and I really want to go. I say ‘Yes’ because I know going to lunch will allow me to feel normal for a little while… but if I’m having a bad day that day and can’t go…people don’t get it when I cancel at the last moment. They don’t invite me again.”
This is true for caregivers as well. Caregiving can be very lonely because most often it is done in isolation. When you are tangled in a cocoon, you are not free to pick up and go on a whim. You also may find yourself cancelling plans at the last minute when your loved one is “not having a good day.” Your friends may be concerned for you, but they go on with their lives.
Many people are frightened by the cocoons of people with disabilities. One woman told me, “If I was bitten by a shark, I might not be so scary because people don’t think a shark will ever bit them as long as they stay out of the ocean. But, I have a disease and if that could happen to me, it could happen to you too. That’s why people are afraid of me.”
Albert Schweitzer said, “Depersonalization is worse than death.” A man told me, “Smiling for the chronically ill is what they do instead of crying.” A caregiver may notice that when you take your loved one out in a wheelchair that the people around you speak to you rather than your loved one: “I feel invisible,” wheelchair-bound people have told me. Make a point of including them in the conversation. Modeling comfort with those who are cocooning may reduce their sense of isolation.
Consider the following for peace-making and tool building:
Feelings: Anger, hope, fear, guilt, jealousy, helplessness, sadness. When a loved one is ill, we are forced into strange and unfamiliar situations. This threatens our security and may cause many emotions. Having a safe place and understanding people to talk with about these emotions is very important. A community of supportive people can keep you from losing “you” in the caregiving process. Then, you will have a “you” to grow into your changed life. Supportive people can “cocoon” YOU. Afterall, a cocoon is a safe place for dramatic change.
Self-care: If you don’t take care of yourself, you will not be able to care for anyone else. Physical exercise, eating healthy food, drinking plenty of fluids, maintaining adequate rest, seeking medical care for your own health issues, and having sources of fun are all important self-care needs to build into your daily routine. Find people to talk with. Set realistic goals and arrange time for yourself. When someone says, “What can I do to help?”, tell them to sit with your loved one so you can have some respite to take care of your own needs. Don’t let your pride interfere with receiving help and support.
Advocating for your loved one: When your loved one has unmet needs, speak up. Let the doctors and health care professionals know. The caregiver knows the patient better than anyone else. Your voice is important for the healthcare team to hear. The healthcare team relies on you to make your loved one’s needs known. You may have to speak your need repeatedly to numerous people. Until the need is met or you understand why it is not, keep asking until you are satisfied.
Communicating with medical staff: Frequently families say, “I don’t know what is going on with________”. You have a right to understand what is happening. You can schedule an appointment with the doctor. Write your questions down to help you remember. If you don’t understand what the physician tells you, ask for clarification.
Advance directives: These documents explain to the medical staff what medical care or treatments the patient wants if they are no longer able to make decisions for themselves. Do you have advance directives complete for yourself and your loved one? If not, we can help you complete one.
Health care surrogate: This is a trusted person appointed by the patient to make decisions for them in the event that they cannot make them for themselves. Because someone told you that they want you to make decisions for them, does not necessarily mean that legally the medical staff will be able to follow your directives. This must be written and witnessed to make it legal. Without such documentation, the legal next of kin is responsible to make decisions. Health Care Surrogate is no longer valid once the patient has died and in no way affects the patient’s last will and testament.
Legal next of kin (NOK): Legally, next of kin does not necessarily mean the person closest to the patient. We refer to the person who is close to the patients and not legally the NOK as the next of heart (NOH). The NOH has no legal rights. Unless you are related by marriage or blood, you are not the legal next of kin. An estranged wife who hasn’t seen the patient in twenty years could be legally the NOK. An estranged son or daughter who never remembers meeting the patient may be the legal NOK. If the patient wants you to be the one acting for him/her, this must be done legally.
Wills: A will is a legally binding document which one completes prior to death to direct the distribution of one’s earthly possessions after death. A person must be of “sound mind” to create a will, so it is important to complete before mental deterioration starts. This can be done with a lawyer, by completing a standard will available in office supply stores, or by simply writing out your wishes. This must be notarized and witnessed to be legal. In the will, a personal representative/executor is named. This person insures that the wishes in the will are completed. If no will is left, the legal NOK will assume this responsibility. Many people make their wishes for funerals, burial, etc. known in their will.
Durable power of attorney (DPOA): This is a legal document, which allows a designated person to act on behalf of another. If you are unable to act in your own behalf, you may designate a trusted person to take care of your personal business, banking, bill paying, etc. DPOA ceases upon the patient’s death.
Details office: This office at the Veteran’s Administration handles the care of the patient’s bodily remains after death. When someone is getting close to the end of life, it is helpful to visit the details office before he/she dies. There, you will get information about what parts of the final arrangements are your responsibilities and which are the VA’s. They can also provide information about funeral homes and types of burial. You might be surprised at how much better you will feel after this is accomplished.
Autopsy: An autopsy can be done at the request of the family. This may be helpful in determining the cause of death, assist with research, or identify genetic risks for other family members. Limited autopsies can also be specified, if you prefer. Limited autopsies only examine the part of the body suspected of causing the death. You can also specify that certain body parts (such as the brain) not be examined.
Organ donation: Discussing organ donation with your loved one prior to death can help you to know their wishes about donating organs. Even if the patient requests organ donation, the legal NOK will have the final say about donating organs after the death because all patient rights cease upon death.
Florida Department of Veterans’ Affairs: Many questions arise about eligibility for benefits when a veteran is sick. There are Veteran’s Service Officers can help you with these concerns.
Children and grandchildren: Community hospices have special camps and programs to assist with children’s grief. Ask for a referral. Schools can arrange for grief support for your child through their guidance department.
Consider the following websites to help:
The National Family Caregivers Association and the National Alliance for Caregiving
www.thefamilycaregiver.org or www.caregiving.org.